WHY Advocating for your Chronically Ill Child – with school and caregivers – is CRUCIAL to their livelihood

I am a mother of a chronically ill child. My daughter is 16 years old, and has been living with Lupus since she was diagnosed at the age of 5. Having Lupus is not the end of the world. But, your do need to prepare the rest of the world on how to interact/what to expect of your child if they have a chronic illness that may affect their interactions, abilities, access, and quality of a school education or level of care.

WHY is advocating for your chronically ill child to the school and caregivers so crucial? It can make the difference between “bearable” and “natural.” For children, and they TRULY want is love, acceptance, and understanding. They don’t want to be “different.” Advocating, in this sense, means to make things easily understood so that it is readily accepted and natural.

As a parent, you can’t let the disease define your child. YOU must define the disease, and let YOUR child shine through.

It does NOT have ME.

Once your child can shine through, it is easy to get and give love, acceptance and understanding.

I want to make some clarifications:

This is a blog – sharing with you my personal experiences. You will find very real commentary and real applications in this advocacy series. What you will NOT find is a a quick list of what to do/how to do it. I find that with being an advocate, you must show how things are done. You must illustrate.You, the parent, must be the storyteller. And the story is your child. If you want a quick list of things to do/how to do it, google “advocating for your chronically ill child” and you will get lots of good results. If you are looking to see a true, personal account of how it was handled by a real mom & chronically ill child, see our hopes, thoughts, hearthaches and real results, you will find that here. AND, hopefully, you will find some inspiration here as well. It’s what we all want, right?

This will be a series. If you want to do something right, with grace, and with humanity, it’s going to take a few different approaches, and when all wrapped together, the result is AH.MAZ.ING.NESS.

What do I mean when I say, don’t let the disease define your child? Your child shouldn’t be whispered about, “oh – Little Suzy has Lupus.” When other people see your child, they should see what you see, they should see THE CHILD, and lupus (or insert any other chronic illness here) is one of many things that might be used to describe her – it shouldn’t be the first thing that comes to someone’s mind, and most importantly, it shouldn’t be the thing that DEFINES her. It’s your job to show people that.

This series is about understanding & communicating. Truly, if we all understood what someone else was going through, we would treat that person with the respect and humanity that we all expect and deserve. How do we communicate and reciprocate that kind of understanding without letting it define us, define our child? THAT is what I will attempt to illustrate.

And if done right, advocating can make that difference in making school not only bearable, but “normal” for your chronically ill child. And at the end of the day, that’s what we want for our kids right? We don’t want the Lupus (or insert other chronic illness) to take over their lives – we want them to be able to have a “normal” life – whatever that may mean. Right?

Comments

I have a son with autism and have often been accused of being one of “those” moms. I seriously went all Marcellus Wallace on some douchecanoe who told me to just “let the school handle things their way”. Excuse me? Oh, HELL to the no!Jen recently posted..Foodie Friday: Eatin’ Good in the Neighborhood